Josh's Story

We want to take a moment to tell you about the life of our beautiful boy, Josh, and how Claire House gave us the care, compassion and time to make the lasting memories every family deserves to have with their children. The support they gave to our family was beyond words, and we hope by sharing our story, you might support them with a donation so that more families can receive the same comfort and care.

Our Josh was incredibly mischievous. Despite being in an incredible amount of pain for most of his life, he was such a happy boy.

There was always a sort of cheeky smile on his face. If there was a cup on the edge of a table to knock over or equipment he could grab while you were doing his care, that’s what he’d do. Someone once noted, ‘If there was a joke in the room, Josh was in on it!’.

When Josh was born, we knew something wasn’t right. He couldn’t breathe and went straight into intensive care. For most new parents, hearing something is wrong with your child, but not knowing what, or how to fix it, is unimaginable. Instead of going home with our newborn, the hospital became our home for the first eight months of his life. At four weeks old, he had a tracheostomy placed into his neck to help with breathing. He couldn’t eat, so a special feeding tube was put in his tummy too.

After two years in and out of hospital, countless infections, and endless uncertainty, we finally got an answer: Josh had Fox G1 syndrome – a rare neurological disorder. We were told Josh wouldn’t have many years.

Josh faced so many medical challenges - to say that he had a lot going on was an understatement. So many devices were needed to help Josh’s body to function, and he needed our 24-7 care. Along with his tracheostomy, he also had a colostomy bag to collect his body’s waste. He was PEG-fed and wheelchair-bound and developed visual problems. Watching your child suffer, knowing you cannot take that pain away, is heartbreaking.

But alongside the fear and exhaustion came something else: isolation. There we were, in a small village, surrounded by families with ‘healthy’ babies – families just getting on with life. We were on our own, feeling incredibly alone.

That’s when Claire House entered our lives.

When you first hear the word ‘hospice’ it’s terrifying. For us, it made everything suddenly feel painfully real, we could no longer pretend that death wouldn’t be part of our reality.

But when we walked through the doors of Claire House as a family, everything changed.

It was warm. Full of smiling faces. Full of life.

For the first time in two years, we were offered something we hadn’t realised we desperately needed: respite. Looking after a child like Josh means being constantly on high alert – with the number of interventions that he had, something could go very wrong, very quickly. We often remember being halfway down the stairs at 3 a.m. before we’d even properly woken up because we heard Josh’s alarm go off. You can’t ever just relax.

But at Claire House, for the first time, we could breathe. They didn’t just care for Josh medically. They cared for all of us. In their hands, we had a safe place where Josh was supported, where we could sleep through the night without the constant worry of alarms or the fear that something would go wrong. 

They gave us the chance to be Josh’s parents again too, not just his carers.

And for Josh too, it was a place to experience new things he came to love, like the wheelchair swing in the garden, throwing paint around the art room, or knocking things on the floor that he wasn’t supposed to. When baby Seb came along when Josh was four, Claire House became a place for them to make memories together.

We took each day as it came, simply enjoying being Josh and Seb’s parents, grateful for every day we got. Josh was a fighter. He was strong – despite all the medical setbacks over the years. As he grew, his sense of humour spread to everyone he met. And he absolutely adored his little brother. Whenever Seb walked into the room, Josh’s face would light up and he’d have the biggest smile. Seb – well, he’d take over Claire House as soon as he arrived!

But each time we pushed Josh’s wheelchair in for a visit, we’d be reminded of the Butterfly Suite. It’s a room, they explained to us, where we could be with Josh when he died, for as long as we wanted. Someday, unthinkably, it would be us needing to use it...

Even though we knew that Josh was not going to get better, there was comfort in knowing there was a place we could all go in his final days, a place where he’d spent so much time and made so many memories. It was our wish that Josh could pass away at Claire House.

But it all happened too quickly. He was smiling and his normal self on Friday but by Monday, they were telling us it was too late. Josh had sepsis and he went downhill fast.

We had to make a choice. Claire House was further than the local children’s hospital. We couldn’t take the risk that he wouldn’t get there intime, or we wouldn’t be with him. Or that he could pass away on a motorway.

The hospital wasn’t a new place for us, but it wasn’t Claire House. It also wasn’t the place for Seb, who was now eight, to say goodbye to Josh.

We sat beside Josh as he died. Then you’re leaving that room, following the trolley with Josh in it. You’re trying to process what’s just happened. But at the same time, you’re bombarded with the sounds of an intensive care unit – the bright lights and the people rushing around.

But in the midst of our heartbreak, Claire House was there for our family. We brought Josh to the Butterfly Suite and the team made it feel like Josh’s own room.

Josh looked very peaceful and, in the days that followed, it gave us the opportunity for the three of us, along with our extended family - his grandparents, auntie, uncle and some of his carers - to say goodbye to him. Then, we did one last night shift with him. That’s a time we will always cherish.

Seb loved Josh so much; their bond was just undeniable. We’ve always been honest with Seb, and he knew no one could make him better. But as you can imagine, this journey for him has been something that separates him from other ‘normal’ children.

Since Josh died, the Siblings Group at Claire House has been absolutely vital for Seb. It’s given him a place to be around other kids that just ‘get it’. He went on a trip with Claire House just a month after and brought his teddy bear (also called ‘Josh’). There’s nothing more beautiful as a parent than seeing photos of your child going down a waterslide, looking carefree, and having the time of his life, in the wake of something so tragic.

We simply don’t know what we would have done without Claire House. But families like ours still need support every day.

With Josh’s story, we want to bring awareness of how essential Claire House is and that the charity is not going to continue without you. With limited government funding, the hospice relies on our community to continue providing critical care for seriously and terminally ill babies, children and young adults, but also parents, carers and siblings. And the team has told us that every day, demand for Claire House’s amazing care increases.

So today, we’d like to ask if you can donate to help this incredible place throughout the summer. Your kindness could help another family like ours find comfort, rest, joy, and compassion in the darkest moments imaginable.

You’ve probably heard on the news just how challenging it is for hospices currently. Every single pound will go towards delivering the essential care we know is needed throughout our area. Please, if you can, give this gift of care to families in need – the time, memories and support Claire House offers is truly priceless.

Wishing you a summer filled with light and joy,

Clive, Kate and Seb